Monday, April 11, 2016

'Roid Rage

Thank you to everyone that is asking about and praying for our sweet Ellie.

Today was better than the previous days, but not without it's difficulties. She is still having intense mood swings from the steroids, which means she spends a lot of the day crying. Any little thing can set her off, especially when she does not get her way. There is a fine line that we are walking of being understanding about her circumstance, but also not letting her rule the roost so that when we go home she becomes a complete Baby B. (Yes, the 'B' means what you probably think it means. It's a nice way of saying that your child is being completely unreasonable without actually called them a crude name. Feel free to borrow it.) Needless to say, she is not the sweet, happy little girl that we checked in with last Saturday. It is completely understandable though, and I cannot imagine what her little body is going through.

Life is not good right now.

Distractions are welcome, and today she received plenty of them. Ellie enjoyed touch therapy, music therapy, and was even able to go outside for a wagon ride today! For her first week in the hospital she was on contact restrictions, which meant that she could not leave her room, and anyone that visited her had to be in a gown, mask and gloves. Now those restrictions are relaxed and she is enjoying the freedom.

Mike and Ellie's nurse trying to get her to stand up before going outside.

Life is about to get a little bit happier. 

Ellie's first time outside in over a week.
And her first time out of her room that was not for a procedure.

Fun with bubbles!

Ellie had several bowel movements today, which is a huge relief. (Ah, the things we get excited about as parents.) However, Ellie is now facing another, more serious problem. She hasn't really walked or stood in two weeks due to all of the pain in her legs. We have tried to get her to stand, but she just collapses in our arms. We are going to have someone from physical therapy come tomorrow to work with us and her to begin strengthening her legs.

Please pray that Ellie regains strength and mobility in her legs soon.

Pray that the mood swings end completely while she is on the steroids.

Continue to pray for Ellie's complete and permanent healing.

If you are reading this now, thank you for all of your love and support for our family. We are more than blessed.

Ellie will often grab my hand at night when falling asleep.


  1. I am so sorry for what your family is going through. We are praying for complete healing and all you need throughtout this time.

  2. Thank you so much for your prayers.